a journey of a thousand miles begins with a single step…

my friend adrienne who owns frolick jewelry designed a necklace for me to wear – each charm represents someone who has fought leukemia and who has inspired me.

the leaf is for the grandmother of two of my best friends. she was an avid gardener and i thought a leaf was a fitting charm for her. the green stone is for my great aunt elsie – mom told me that her favorite color was green. the red stone reminds me of my friend john kark and his fighting spirit. he passed away in april, but the chicago fight club lives on in his memory. the “M” is for maddie komatsu, who’s the bravest little girl i know. actually, she’s not so little anymore, but reading her struggles as she battled leukemia really have kept me strong throughout my training.

This weekend I came home to Maui to hold a benefit garage sale for the Leukemia Society. A huge mahalo to those who donated items (including mom, who worked on cleaning out her storage unit!) and those who showed up to help – Matt, Kelsey, Daniel, Todd, and my dad… It was an unusually slow day for us, but we were able to raise $100 for the Leukemia Society and I made sure to let people know what good their purchases were doing. One woman shared that her father had passed away from Lymphoma, and many others had stories of family or friends affected by other forms of cancer. So even if we didn’t raise as much as I hoped, I know we were able to spread awareness and to lift people’s spirits – it even pulled a couple of people out of “hard bargaining” mode and I did get a few who said “keep the change”… I definitely consider it a success.

Since I missed out on Saturday’s normal long run with the team, I asked my dad if he’d want to go on a long run for father’s day morning with me. He planned out a (REALLY HILLY!) run through makawao/haiku and we put in about 6 or 7 miles-ish. It was a nice father-daughter run, with lots of random things to look at along the way. My dad pointed out the places he used to swim, the yard where he got bit by a pit bull, the area where he and my brother cut down a guava branch to fashion into a sword. We also saw tons of guava bushes, six nene birds, and tons of goats… Definitely felt like Maui! As we ran down Kokomo road, it got us hungry for Fukushima’s hot dogs, so later we got my brother to come along with us. What a delicious father’s day…

fukushima store in haiku

fukushima’s is so “mom & pop”, you gotta love a hand drawn sign like this for father’s day…

but here’s the good stuff that we really came for… it’s such simple food but somehow tastes SO GOOD… especially when washed down with POG!

With the $100 from the garage sale, along with recent donations on the website (just waiting for the $150 from Hibiscus half to show up!) I’ll be up to $1370 so far… My next big fundraiser is CPK day on Tuesday, July 6th, so get ready for some pizza everyone!

(I’m still waiting for a $150 credit to show up from our volunteer time at the Hibiscus half marathon, but as of 6/16 we are at $1,095 raised for the Leukemia Society this year in memory of my friend John Kark. Yay!)

Aloha friends & family!!

Thanks to your generous donations, I’ve reached the 20% mark – to
date, we have raised over $1,000 for the Leukemia & Lymphoma Society!!
Earlier this month, we worked at the Hibiscus Half Marathon, earning
over $200 for the charity in a single (very, very early!) morning!

This SATURDAY, I’m planning a garage sale in Makawao, Maui from 8am to
11am to benefit the Leukemia Society. We can still use donations of
gently used items, and if you have a few hours that morning, please
feel free to stop by and shop or to help with manpower…

Tomorrow makes 4 months til race day! My training has been going well
– I actually ran over 8 miles last weekend, which was the longest I’ve
run in months. I’m working hard on getting those miles in, but I need
your help to make my goal of $5,000 this year in memory of my friend
John Kark.

today our training run began at triangle park, on the other side of diamond head where it borders kahala… i like training on this route because it reminds me of the honolulu marathon – part of the run goes by the “mile 25ish” hill that leads up to the surf lookouts… sooo many painful moments along that part of the course! i remember one year (i think ’07?) when i had walked from mile 6 because of my IT band injury and when we got to the bottom of that hill, i broke down in tears! but then there was also last year when karlee and i were in great shape by that point, so much so that we stopped off for beers from a random keg on the side of the road!!(more…)

i just wanted to draw your attention to a new corner of this site that i’m going to be keeping updated… there’s a page for current and upcoming fundraisers where you will be able to see the latest fundraisers i’ve got coming up, as well as other ways you can help this cause…

as of today, june 1st, i’m up to $725 raised, with 3 months to go to reach $5000! my goal is to be finished with my fundraising by september 1st so that i can focus on getting my body in shape for the 13.1 mile nike women’s half marathon october 17th, and then the 26.2 mile honolulu marathon in december! you can make a donation by clicking here. mahalo!!

i just wanted to share a story from one of my newest teammates, taui. she is a leukemia survivor celebrating 10 months in remission by signing up with us to run in the nike women’s half marathon! she’s also a wonderful example of where your donations are going, because her treatment was developed thanks to monies raised the the leukemia society. you can follow her blog at http://bamboodays.wordpress.com. here is her story in her own words… go taui! =)

My name is Tauiilelagi Fernando, or simply Taui, and I am currently living with Chronic Myelogenous Leukemia (CML).

I was officially diagnosed with CML on August 5th, 2008. One year prior to being diagnosed, I was just your average working girl in her twenties with a lot on her plate. My mother was diagnosed with Lou Gehrig’s Disease (ALS) in 1997, and upon graduating from college, I moved home to help my family care for her. So there I was, juggling a full time job, caring for my mother, father, and younger siblings, and taking care of the family finances. In addition to all of that, I had a very active lifestyle that not only kept me in good shape but also helped with regulating my stress levels. Sometime in 2007, I suspect shortly before my wedding to my wonderful husband that July, I noticed that I was starting to feel very worn down, tired, and would have trouble catching my breath. I went from working out in the gym for two hours on end to managing only fifteen minutes because of the shortness of breath I was experiencing. Friends started telling me that I was looking tired and pale, something that was out of the ordinary I guess if they brought it to my attention. I also started to experience pretty bad headaches and sharp head pains that felt like someone had been sticking needles into my brain. I would experience vertigo while sitting. I went in to our local ER a few times to see if they could see if there was something wrong, but the MRI they ran for my headaches came back negative for any malignancies. I was told to take Tylenol and get plenty of rest and to exercise (which, ironically, I was having difficulty doing because of my SOB), but not once did they draw my blood. I also started to bruise easily and lost weight without even trying, and lost about 50 pounds at the time of my wedding. At the time, I welcomed the weight loss as a GREAT thing because I looked awesome in my wedding dress, but little did I know that the weight loss and bruises would prove to be preludes to news that I never thought I’d hear in my life.

In May 2008, I traveled to Honolulu for a three-month work assignment for my job with the American Samoa Government Department of Commerce. That July would mark my husband and I’s one year wedding anniversary, so he flew up to Honolulu to celebrate. A couple days before our anniversary, we scheduled a visit to a local outpatient clinic, The Medical Corner, to have our first annual check up. It was difficult to schedule regular check ups in American Samoa because of our hectic schedules and our inability to get solid appointments with doctors on the island, so we figured it would be great timing to go while we here in Oahu. We met with the physician assistant, Mike, who ordered baseline diagnostics and did a regular check up routine on us both, which included CBCs (complete blood count). We got our blood drawn at a satellite lab, and scheduled our follow up visits in the next week. This was Friday morning. After we left Mike’s office, we went to watch our nephew Justin practice at a football clinic being held at the University of Hawaii at Manoa. At around 5 pm that same day, I got a call on my cell from Mike, who told me that he just got MY blood results back and that he needed to discuss them further with me. He told me to be back in his office first thing the next week. Now, I had the whole weekend to worry and wonder why the heck he wanted to see ME, I was healthy! I mean, I was tired, but I’d never had any prior health problems to worry about. That reasoning turned out to be denial on my part.

Tuesday morning, we arrived at Mike’s office. For some reason, I told my husband to wait in the waiting room. I had some sort of premonition of the worst case scenario by this whole thing, but my husband the optimist, encouraged me to not waste energy on worrying about the unknown. So I followed Mike into the room, sat down, and heard my worst fears confirmed before me. My blood work came back with my white blood cell count 8 times the normal level. I asked if it could be because of an infection we couldn’t see, but he answered that the normal range for white blood cells are between 3-10, with 10 being when you’re at your sickest. He then proceeded to tell me something that I thought I’d never have to hear: the only reason your white blood cell count would be THAT high is if you have cancer. I was shocked by the news, to say the least. As I went over all the things I had been feeling over the past year, it was like my intuitive voice, my body’s voice, was just confirmed. Something had been wrong, but never in a thousand years did I think that it would be THIS wrong. After I cried my eyes out and got a sympathetic hug from Mike, he told me to hope for the best and prepare for the worst. He then told me that the next step was to run a series of genetic tests to verify what kind of cancer I had, and sent me to get an ultrasound of my abdomen. I think he had an idea of what I had, but didn’t want to say anything just yet. He also began calling around to various oncology offices to set up a consultation for me.

After calling several offices and being turned away because of my lack of insurance, he found my current oncologist, Dr. William Loui of OnCare HI, Inc., one of my many angels here on earth. When I first met Dr. Loui, he said something to me that I will never forget. He shared with me that he took me on as a patient not only because of my unique case (apparently CML patients are rarely diagnosed in between childhood and old age), but also because he didn’t want to be the one to tell me “no” – to deny me my chance at living a happy and full life. He was also aware of my lack of insurance coverage, but did everything in his power to keep my visits affordable by giving me a 33% discount on his services and prescribing me generic drugs that would do the job, for now. He started me on a daily regimen of oral chemotheraphy medication (hydroxyurea) to stem my white blood cell (WBC) count from climbing higher and higher.

Sometime in October, after my state provided medical insurance (MedQuest) kicked in, I was prescribed Gleevec to treat my condition. Unfortunately, I started to develop an allergic reaction to Gleevec that would strangely manifest itself whenever I ate Korean food (I love Korean food!). So after a few bouts with that, Dr. Loui decided to take me off Gleevec, and put me on another CML treatment option called Sprycel. The published side effects of this drug were quite frightening when I first read the medication information, but fortunately, the only side effect I really seem to experience is a permanent appearance of “goose bumps” on my arms and legs. But in the end, the overall result of this treatment is prolonging my life – which is worth those silly goose bumps after all.

As of today, it’s been 10 months of remission for me. And I am just living life and looking forward to my future with, and without, leukemia 🙂